Hope 4 ME & Fibro Northern Ireland.......... ...........THE STORY SO FAR:

Hope 4 ME & Fibro Northern Ireland began many years ago as a thought, by a patient who found herself  bed bound due to a mysterious illness. She felt she was alone and there was no one who could help her, so she had a goal to get well and help other people like herself. That patient was Joan Mc Parland Treasurer of Hope 4 ME & Fibro Northern Ireland.

 When Joan met a few like-minded people things began to take shape.

 Today the "Hope" charity is stronger than ever we have 70+ members a dedicated committee and a number of dedicated volunteers who all help to keep things going. We have hosted both patient and medical conferences, regularly bringing top Doctors and Researchers to Northern Ireland, we continue to fund raise for Bio-Medical research, liaise with all major ME/Fibromyalgia charities both in UK and Ireland, highlight awareness at every opportunity, we have full support from Newry, Mourne and Down Council and local politicians, and our aim to accomplish ME patient care services in Northern Ireland is coming closer every day. We believe that the 7,000 approx. ME patients in Northern Ireland deserve the best treatments available and we continue to lobby local government to achieve this aim.

We were awarded the Patricia Graham Shining Light award at the 2013 Volunteer Now awards, making us visible to other Newry & Mourne community groups. Our awareness event in May 2013, to light up the 18 arches (Craigmore viaduct) went global via Facebook, triggering interest in Japan, Canada and USA.


 If you, or someone you know has ME or Fibromyalgia come along to our next meeting where you will meet people who know what its like to live with these debilitating illnesses, you will get up to date information on treatments, research, benefits and advice and opinions of people who know what its like to struggle every day with ME/Fibromyalgia. We have a guest speaker every month and a cuppa, so if you or your family and friends want to become a member or volunteer with us come along to our next meeting or contact us through this website or our e-mail address, everyone is welcome.


Hope 4 ME & Fibro Northern Ireland Achievements to Date



SUPPORT GROUP FOUNDED APRIL 2011

NEWRY & MOURNE ME/FIBROMYALGIA
SUPPORT GROUP HOSTED AND FUNDED INTERNATIONAL ANNUAL CONFERENCES IN NORTHERN IRELAND


(Professionally produced DVDS still available for purchase)

Additional past funders acknowledgement:

Awards for All, Big Lottery Fund N.I.

Feile Joe, The O'Toole Family, Ballymacnab, Armagh

Newry & Mourne District Council

Eileen Laura McConkey, Memorial Fund

 


THE HOLIDAY INN, BELFAST

PATIENT CONFERENCE
27th OCTOBER 2011

Main Speaker: 

Dr. JUDY MIKOVITS, PhD

Other guest speakers included: 

Dr William Weir

Derek Peters

Basil McCrea MLA

Attended by 120 patients including medical professionals.

donation of £1200 was forwarded to The Whittemore/Peterson Institute, USA

...............................................................................................



THE LANSDOWNE HOTEL, BELFAST

PATIENT CONFERENCE
1st March 2012

Main Speaker: 

Dr. DEREK ENLANDER

Mount Sinai Hospital, New York

Other guest speakers included :

Mr. Michael O'Reilly, Irish ME Trust, Dublin. (IMET)

Dr. Weir

Jim Wells MLA

Basil McCrea MLA

Attended by approx 400 patients, including some medical professionals

donation of £1000 was forwarded to ME Research UK

 
....................................................................................................




 MOURNE COUNTRY HOTEL, NEWRY

INTERNATIONAL PATIENT CONFERENCE

11th NOVEMBER 2012.



MAIN SPEAKERS: 

DR. DEREK ENLANDER

DR. JUDY MIKOVITS

DR. CHARLES SHEPHERD

DR. WILLIAM WEIR

Attended by 140 patients, including some medical professionals

 
...........................................................................................................................
 


THE MOURNE COUNTRY HOTEL, NEWRY

MEDICAL PROFESSIONALS ONLY
CONFERENCE
23rd OCTOBER 2013 




ACCREDITED 3 CPD POINTS BY THE ROYAL COLLEGE OF PHYSICIANS, LONDON (RCP) 

Main Speakers :

DR CHARLES SHEPHERD, MEDICAL ADVISER AND TRUSTEE, ME ASSOCIATION, UK

DR.GREGOR PURDIE, NHS Dumfries & Galloway

DR.WILLIAM WEIR, INFECTIOUS DISEASE CONSULTANT, LONDON

MR. HORACE REID, PATIENT EXPERT

Attended by GPs, Physiotherapists, Occupational Therapists , Local Health Trust decision makers.

..................................................................................... 



MOURNE COUNTRY HOTEL, NEWRY

PATIENT CONFERENCE 


2nd FEBRUARY 2014 


Main Speaker: 

PROFESSOR MARK VANNESS


Attended by 110 patients

 


THE LONG GALLERY, STORMONT BUILDINGS BELFAST

4th FEBRUARY 2014. 


PROFESSIONALS ONLY EDUCATIONAL CONFERENCE.


ACCREDITED 2 CPD POINTS BY THE ROYAL COLLEGE OF PHYSICIANS, LONDON (RCP)

Main Speakers: 

PROFESSOR MARK VANNESS, THE WORKWELL FOUNDATION, CALIFORNIA

DR. VANCE SPENCE, ME RESEARCH UK. SCOTLAND

DR. WILLIAM WEIR, LONDON

MR.HORACE REID, PATIENT EXPERT

MR. JIM WELLS, MLA

EVENT SUPPORTED BY MR.DOMINIC BRADLEY MLA

Attended by GPs, Health & Social Care Board (HSCB) MLAs from all political parties,
Lead Occupational Therapists, Physiotherapists, Researchers, Clinical
Specialists, representatives from other N.I. Patient Support Groups including
Fibromyalgia Support N.I., ME Support NI., Limavady FMS-ME Awareness N.I.,
Banbridge and Dromore FME-ME Awareness.

Full attendance 94.

 ..........................................................................................


MOURNE COUNTRY HOTEL, NEWRY

PATIENT CLIENT COUNCIL. (PCC)
 

08 April 2014


First N.I. Focus Group for M.E. and Fibromyalgia


................................................................................................................................................................




MOURNE COUNTRY HOTEL, NEWRY


N.I. FIRST SCREENING OF EDUCATIONAL
DOCUMENTARY 'VOICES FROM THE SHADOWS' 



Attended by patients, GPs and MLAs

 
.............................................................................................................................................





'SUPPORTED ONLY' EVENTS



Newry District Council Civic Reception

Presentation on M.E and Fibromyalgia

2nd November 2011 


.............................................................................................................................................




The Long Gallery, Stormont Buildings, Belfast

ME Support NI 

4th December 2012



'Voices from the Shadows'


...................................................................................................................................................................






Fiddler's Green Festival


28th July 2013 



Patient Testimonies by: 

Mrs. Joan McParland

Mr. Horace Reid

Supported by Mr. Jim Wells MLA

 
....................................................................................................................................................................






The Long Gallery, Stormont Buildings, Belfast

13th JANUARY 2014 


Rare Disease Partnership

...........................................................................................................................................................................



Long Gallery, Stormont Buildings, Belfast

11th February 2014 


Patient & Client Council (PCC)  

'Pain survey report launch'

Patient
testimony delivered by Chairperson, Miss. Martina Marks.
 
............................................................................................................................................................................

 

Banbridge Council Town Hall,  Council Civic Reception

2nd APRIL 2014




Newry & Mourne ME/Fibromyalgia Support Group presented information pack,
including copy of 'Voices from The Shadows' educational DVD, to Health
Minister, Mr Edwin Poots MLA.


Chairperson attended PCC Board Meeting
PCC Offices Lurgan

Dec. 2013




Valerie Moody's ' All Things Beautiful' fundraiser in Donegal 
22 June 2013

Information pack, including educational DVD was presented to
 Dinny McGinley TD


 

SINCE 2011 AND TO DATE.

TOTAL FORWARDED FOR BIO-MEDICAL
RESEARCH

£12.4447.86
 

 Lobbying Government for Specialist NHS Services



Meeting with HSCB and PHA representatives. Belfast
8th NOVEMBER 2011 




Health and Social Care Board (HSCB)
2nd MARCH 2012 

Newry & Mourne ME/Fibromyalgia Support Group funded Dr.Derek Enlander,
New York

to also attend and speak on behalf of all patients in N.I.

(Ongoing)
 

Meeting with Stormont Health Committee, Stormont Buildings, Belfast


27th SEPTEMBER 2013 

(Ongoing)





Health and Social Board , Public Accountability Meeting, Riddle Hall, Belfast

12th MARCH 2014 





Questions directly to Minister of Health, Mr Edwin Poots and members of HSCB.

Answers were not obtainable on the night.

 


Follow up of above........questions were sent in writing to DHSSPS.

27th MARCH 2014 


(Ongoing)


All Patient support group members completed AFME survey.

1st APRIL 2014 




Online Petition was compiled and 1400 patient signatures obtained for
 the DOH to adopt the use of the Canadian Consensus Criteria in
 Northern Ireland


3rd April  2014


(Ongoing)



All N.I. MLAs from all political parties also received written request to support
the adoption of CCC.


4th APRIL 2014 


Requests of support were also forwarded to International Clinicians, Researchers and
Leading patient support group Trustees.





Meeting and discussions with Keith Anderson, ME/CFS Clinical Nurse Specialist for Fife, Scotland.


5th MAY 2014 


(Ongoing)





Discussions for support from PCC to obtain Specialist NHS services with
 Louise Skelly,

Head of Operations of The Patient & Client Council.
3rd JUNE 2014 

(Ongoing)





Support Group Medical Adviser, Dr. William R. C. Weir


Dr. Weir travels to N.I. on a
regular basis, for patients wishing to book a private consultation, contact
details can be obtained from any committee member

MBChB
1972; MRCP (UK) 1975; FRCP (Lond) 1992: FRCP (Edin) 1998. Hon Senior Lecturer
in Clinical Tropical Medicine, London School of Hygiene & Tropical
Medicine. Hon Senior Lecturer in Infectious Diseases, Royal Free Hospital
Medical School.

("Specialising in medico-legal work supporting patients with ME/CFS, and
highly regarded by the UK judiciary Much-requested speaker at International
Conferences on ME/CFS.

Succeeded Dr Melvin Ramsay at the ME/CFS clinic, Royal Free Hospital before it
was closed.")

FREE
MEDICAL INFORMATION PACKS AVAILABLE BY REQUEST ONLY FROM PROFESSIONALS AND AS ADVERTISED ON NHS INTRANET.

SUPPORTED BY THE DEPARTMENT OF
HEALTH, SOCIAL SERVICES AND PUBLIC SAFETY FOR NORTHERN IRELAND. (DHSSPS)

DISCLAIMER

Newry & Mourne ME/Fibromyalgia
Support Group do not endorse or recommend any medications, practitioners
 or 
alternative therapies.

Please consult your medical provider for professional advice concerning any medications or before embarking on any special diets to exercise programmes.

All content is for information
purposes only. The accuracy of any information cannot be guaranteed.






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